The ALS Specific Quality of Life-Revised (ALSSQOL-R)
User’s Guide
Stephanie H Felgoise, PhD;1 Susan M Walsh, RN, ACNS-BC;2 Helen E Stephens, MA;3 Allyson
Brothers, MA;3 Zachary Simmons, MD3
1
Department of Psychology, Philadelphia College of Osteopathic Medicine, Philadelphia, PA
2
ALS Association Greater Philadelphia Chapter, Ambler, PA
3
Department of Neurology, The Pennsylvania State University College of Medicine, Hershey,
PA
Correspondence to:
Zachary Simmons, MD
Penn State Hershey Medical Center
Department of Neurology EC 037
30 Hope Drive, Hershey, PA 17033
[email protected]
Phone (717)531-1802
Fax (717) 531-0384
2011
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Table of Contents
Chapter 1: Introduction ................................................................................................................... 3
History ......................................................................................................................................... 3
Description and Key features of the ALSSQOL-R ......................................................................... 3
Uses ............................................................................................................................................. 4
Clinical Use .................................................................................................................................. 4
Research Use ............................................................................................................................... 4
Cautions of Use............................................................................................................................ 4
Appropriate Samples ................................................................................................................... 5
Chapter 2: Development of the ALSSQOL-R .................................................................................... 6
Chapter 3: Definition of Terms ........................................................................................................ 7
Chapter 4: Test Administration and Scoring ................................................................................... 8
Test Administration ..................................................................................................................... 8
Administration of the ALSSQOL-R in a Multidisciplinary Clinic ................................................... 8
Scoring ......................................................................................................................................... 8
Chapter 5: ALSSQOL-R Interpretation ........................................................................................... 10
Domains ..................................................................................................................................... 10
Sample Patient Profiles ............................................................................................................. 11
Chapter 6: Psychometrics .............................................................................................................. 15
Introduction............................................................................................................................... 15
Methods .................................................................................................................................... 15
Evaluation of the Psychometric Properties of the ALSSQOL ................................................. 15
Instruments Used at all Sites ................................................................................................. 16
Instruments Used at Selected Sites: ...................................................................................... 17
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Sample Size and Statistical Methods ..................................................................................... 20
Testing of Validity, Reliability, and Reproducibility ............................................................... 21
Results ....................................................................................................................................... 22
Personal Characteristics of the Sample ................................................................................. 22
Factor Analysis ....................................................................................................................... 24
Normative Data ..................................................................................................................... 30
Validation............................................................................................................................... 33
Chapter 7: Concluding Comments................................................................................................. 41
References ..................................................................................................................................... 42
Appendix A: ALSSQOL-R Instrument ............................................................................................. 46
Appendix B: ALSSQOL-R Hand Score Sheet ................................................................................... 55
Appendix C: ALSSQOL-R Computer Score Syntax .......................................................................... 57
Appendix D: Items by Factor ......................................................................................................... 59
Negative Emotion ...................................................................................................................... 59
Interaction with People and the Environment .......................................................................... 60
Intimacy ..................................................................................................................................... 60
Religiosity .................................................................................................................................. 61
Physical Symptoms .................................................................................................................... 61
Bulbar Function ......................................................................................................................... 61
Appendix E: Participating ALS Clinics and Directors ...................................................................... 62
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Chapter 1: Introduction
The Amyotrophic Lateral Sclerosis Specific Quality of Life Instrument-Revised (ALSSQOL-R) is a
50 item instrument that measures overall quality of life (QOL) and six specific domains for
individuals with ALS. Forty-six of the items are used in scoring, to arrive at an average total
score and scores for each of the six domains. The ALSSQOL-R can be used in both research and
clinical settings, and is useful as a screening tool in the clinical setting where time is a major
limiting factor.
History
Quality of life (QOL) in patients with ALS does not correlate with physical function.
Unfortunately, many quality of life (QOL) instruments which have been used to assess
individuals with ALS are heavily weighted toward strength and physical function, and therefore
fail to capture other important non-health related factors.1 Existing generic QOL instruments
are thought to be unsuitable because they may not assess features unique to ALS, such as the
inevitability of death and the rapidly progressive series of functional losses. Using data collected
from the McGill Quality of Life Questionnaire (MQOL) 2-5 and from measures of religion and
spirituality, 6-9 it was determined that a QOL instrument for ALS should inquire broadly about
psychological, support, existential, and spiritual issues, and should have a non-dominant
physical domain.10 We used these principles to develop an ALS-Specific QOL instrument (the
ALSSQOL, now revised as the ALSSQOL-R) which would reflect overall self-reported QOL of
individuals with ALS.
Description and Key features of the ALSSQOL-R
The ALSSQOL-R is a 50 item disease-specific questionnaire that is completed by the individual
with ALS. Each item of the ALSSQOL–R is rated by the individual using a 0 to 10 point Likert
scale, with 0 being the least desirable situation, and 10 being the most desirable. The instrument
produces a Single-item QOL score (derived from the McGill Quality of Life Questionnaire – see
Chapter 2: Development of the ALSQOL-R), an Average Total QOL score, and 6 domain scores:
1) Negative Emotion; 2) Interaction with People and the Environment; 3) Intimacy; 4) Religiosity;
5) Physical Symptoms; 6) Bulbar Function. The ALSSQOL-R can be completed by most individuals
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with ALS in approximately 15-20 minutes, and can be administered and scored in either paper or
computer format.
Uses
Potential clinical users of the tool are healthcare clinicians caring for individuals with ALS
including physicians, nurses, social workers, therapists and counselors. Research users include
clinical trial groups and academic researchers in the applied social sciences such as nursing and
psychology.
Clinical Use
The ALSSQOL-R has successfully been implemented in a multidisciplinary ALS clinic. The Penn
State Hershey ALS Clinic has paired the ALSSQOL-R with a self-reported ALS Functional Rating
Scale-Revised (ALSFRS-R)11 as a pre-clinic assessment. Patients complete the assessment in a
paper or computer format prior to their scheduled appointment. The ALSSQOL-R scores are
shared with the clinic team to guide their assessments and interventions. The ALSSQOL-R can be
administered to patients serially over time. Changes in scores can be used to re-assess the
patients over time, including their responses to interventions.
Research Use
The ALSSQOL-R and its original version, the ALSSQOL, have been used or are being used as QOL
outcome measures in clinical trial research to examine the effect of experimental treatments on
individuals’ QOL. Data collected during the development of these instruments has been used to
examine various aspects of QOL and ALS .12-14 Other research efforts are ongoing.
Cautions of Use
There are many life factors beyond the disease that contribute to QOL such as life events other
than ALS, mood state, cultural factors and response biases that may skew ALSSQOL-R scores.
The ALSSQOL-R should be considered as one component of a comprehensive diagnostic
evaluation. The use of the ALSSQOL-R is not appropriate for individuals with cognitive
impairment or with significant psychiatric illness.
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Appropriate Samples
The ALSSQOL-R has been validated on a national sample of adult men and women from 27 to 88
years of age who are receiving care for their disease in ALS multidisciplinary clinics. It has been
used in a broader clinical sample of patients who are in treatment trials or who are not receiving
multidisciplinary care. Normative total scores and scores for specific domains can be found in
Chapter 6.
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Chapter 2: Development of the ALSSQOL-R
The original ALSSQOL was developed by using the McGill QOL Questionnaire2-5, the Idler Index of
Religiosity6, and qualitative analysis of interviews with ALS patients. Additional tools used to
establish the psychometric properties of the original ALSSQOL included the Schedule for the
Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW)15, World Health
Organization Quality of Life Instrument (WHOQOL-BREF)16, the Functional Assessment of
Chronic Illness Therapy - Spiritual Well-Being (FACIT-Sp-12)17, and the Brief Symptom Inventory
(BSI)18.
To test the psychometric properties of the ALSSQOL, a multi-site study was conducted resulting
in the ALSSQOL-R containing 46 scored items and 4 non-scored items. The domains within the
ALSSQOL were developed by principal component analysis identifying the 6 predominant
domains of QOL for individuals with ALS.19 A second multi-site validation study tested the
reduced 50 item measure, confirmed the factor structure and established the psychometric
properties for the ALSSQOL-R (see Chapter 6). A third study tested the ALSSQOL-R for reliability
for self-reporting and computer administration validating that the instrument can be
administered in multiple modes.20
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Chapter 3: Definition of Terms
The Single-item Score measures global QOL and is a summation of one’s perceived state of
physical, emotional, social, spiritual, and financial well-being.
The Average Total ALSSQOL-R score is the average of the 46 scored items of the ALSSQOL-R and
is reported as a value between 0 and 10.
There are six Domains within the ALSSQOL-R, each reported as a value between 0 (worse) and
10 (best):
1. Negative Emotion encompasses a variety of emotional states, including but not limited to
depression and anxiety, experienced by the individual with ALS and pertaining to one’s
outlook about the future.
2. Interaction with People and the Environment describes how individuals with ALS perceive
and respond to friends and family, and how they experience their environment.
3. Intimacy measures experience of, satisfaction with, and desire for social, emotional, and
physical intimacy and sexual intercourse.
4. Religiosity measures individuals’ religious identification, use of religion as a source of
comfort, use of prayer, and engagement in religious practice at home.
5. Physical Symptoms measures the extent to which the following physical symptoms are
perceived as problematic by the individual: ability to move, sleep, feeling physically terrible,
fatigue, pain, bowel and bladder.
6. Bulbar Function measures the extent to which the following bulbar symptoms are perceived
as problematic by the individual: speaking, saliva, communication problems, mucous, and
eating.
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Chapter 4: Test Administration and Scoring
Test Administration
The ALSSQOL-R is designed to be a self-administered instrument but it can also be administered
in an interview format, either via hard copy or on the internet using a survey software package.
The instrument provides concise instructions for completion but a short introduction of its
purpose with an individual or population is recommended. Completion averages 15 minutes per
individual, with a range of approximately 10-25 minutes. It is recommended that the individual
completing the instrument be in a private setting with minimal distractions. It is advisable to
clarify that the ALSSQOL-R can easily be completed by the individual and does not require the
caregiver to respond to the items.
If the ALSSQOL-R is administered in an interview format the interviewer should be instructed to
present each item in an identical form, thereby reducing any possibility of biases or preference
in answering the questions.
Individuals with physical limitations can respond to the items by use of pointing, nods or eye
blinks.
The self-reported instrument should be reviewed by the administrator for missing items.
Individuals should be queried for missing information.
Administration of the ALSSQOL-R in a Multidisciplinary Clinic
The ALSSQOL-R can be used as a pre-clinic assessment. We recommend having the patient
complete the instrument in their home via an internet based survey or with a paper and pencil
version about 1-2 weeks before their scheduled appointment. For paper and pencil assessment,
we recommend having the patient mail their assessment to the health care team prior to their
appointment. The scores obtained from the ALSSQOL-R should be made available to the
multidisciplinary team members prior to their visit with the patient.
Scoring
Each item of the ALSSQOL-R is scored on a 0 to 10 scale, with 0 the least contribution to QOL,
and 10 the greatest contribution to QOL. Several of the items require transposing (subtracting
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the score of the response from 10) prior to calculating a score, specifically items 1-10, 17, 22, 24,
25, 28, 31, 32, and 34. Thus, total scores range from 0 to 460 (10 x 46). An average total
ALSSQOL-R score for each individual ranging from 0 to 10 can be determined by summing the
scores for all questions for that individual, and then dividing by the number of questions
answered by that individual. Subscores can be obtained by summing the responses for the
questions within that domain and dividing by the number of questions answered within that
domain. Please see Appendix B for a hand scoring sheet, and Appendix C for a computer syntax
that can be used to generate automatic scoring with a statistical software package. If data is
being used for research purposes and there are three or less missing scores on an individual’s
questionnaire, data can be imputed via statistical computation. If data is being used for clinical
purposes, the subscales and total score should be computed by totaling the items within the
subscale according to the above directions and dividing by the number of items answered.
There is not an exact formulary to determine the validity of the measure with missing data,
however, certain subscales (Religiosity, Bulbar Function) have fewer items, and therefore, more
than one missing item per subscale could significantly affect the clinical utility of the scores. It is
likely that Negative Emotion, Interaction with People and the Environment, Intimacy, and
Physical Symptoms would still be valid with up to two items missing on each, since the
Chronbach alpha coefficients are high and all items load significantly on the factor.
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Chapter 5: ALSSQOL-R Interpretation
The ALSSQOL-R provides insight into an individual’s self-perceived QOL at any single point in
time. The Single-item QOL question reflects individuals’ global perception of QOL, and this score
correlates highly with the Average Total ALSSQOL-R score. The QOL domains can be used to
identify the importance of specific aspects of QOL. It is helpful to look at the profile of the score
report in all of the domains. The domain scores can be examined for highs and lows, consistency
within an individual profile, and trends over time. Average total and domain scores can also be
compared to normative data for patients with ALS (Chapter 6: Tables 6.3, 6.3a, and 6.3b).
Individual item responses provide details which may not be evident from the overall domain
score and may thus provide individual clinical team members with further clarification and
insight. The ALSSQOL-R can be administered at multiple visits, and values can be compared over
time to identify changes. Examination of serial scores also can identify changes in response to
interventions such as medications, counseling, adaptations, and in-home care.
Domains
Negative Emotion has been shown to most contribute to individuals QOL.21 Patients who score
6.23 or lower on this domain should be further evaluated for depression, suicidal tendencies,
anxiety, concerns about the future and the meaning of one’s life, and ability to cope, as
discussed in the psychometrics section of this manual. Health care providers across a number of
disciplines will find this domain useful. This domain is highly correlated with measures of
depression, anxiety, and positive and negative coping skill sets.
Interaction with People and the Environment. Lower scores on this domain in comparison to
those in Tables 6.3, 6.3a, and 6.3b may indicate the need to evaluate the patient’s social
environment, available social support and their interest in social interactions. This measure
correlates strongly with measures of satisfaction with life, and perceived social support by
family and significant others, but less so with friends.
Religiosity is only descriptive of a person’s religious practices, and not of their spirituality. High
or low scores compared to normative ALS data are not necessarily indicative of problems or
strengths. Changes in this score over time may prompt further exploration. This domain may be
used clinically with other domains to address spirituality and coping, bearing in mind that
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religiousness and spirituality differ from one another. It is particularly useful to look at
Religiosity scores in the context of Negative Emotion scores. If Negative Emotion scores are high
(indicating minimal problems in this area), follow up in the area of Religiosity may not be
indicated because the person may be coping and adjusting well. If, however, individuals are
distressed (low scores on Negative Emotion), it is helpful to review the Religiosity score. If it is
low, then religious intervention should be explored as a possible means to improve overall QOL.
However, if Religiosity is high despite low scores on Negative Emotion, the individual may be
having a religious crisis or conflict, so that religious beliefs are associated with distress rather
than comfort. This combined review is indicated because the Religiosity subscale correlated
highly with the Faith in Illness Scale of the FACIT-sp, but not with the FACIT-sp Meaningfulness
scale. Meaningfulness scale correlated strongly with Negative Emotion, suggesting a strong
relationship between negative emotion and existential concerns (See psychometric section
below).
Intimacy Lower scores compared to ALS norms may serve as a segue to conversations about
relationships and communication between ALS patients and their significant others.
Interventions may be guided toward enhancing physical, social, emotional, and sexual intimacy.
High scores suggest patients have desire for and experience with the various expressions of
intimacy. There are 4 additional items that are not included in the total score and which assess
satisfaction with intimacy (Items 41, 44, 47, and 50). These items provide useful qualitative
information.
Physical Symptoms and Bulbar Function. It is important to realize that the physical and bulbar
scores reflect the patient’s perception of the impact of their physical symptoms on their QOL.
QOL scores in the physical domain may not reflect the more objective measures of function such
as the ALSFRS-R. High objective functional measurements may be associated with low scores on
these two domains, and vice versa. Clinicians may use the scores to prioritize interventions for
the patient based on the impact that the symptoms are having on the patient’s QOL.
Sample Patient Profiles
Patient #1
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BJ is a 43 year old man, married with two young adult children. His ALS Functional Rating ScaleRevised (ALSFRS-R) score is 21/48. He uses an eye gaze system to communicate, supplemented
by dysarthric speech. Despite his bulbar dysfunction, he has normal secretions and still has
normal eating habits. He has no use of his arms and it totally dependent on his spouse for care.
He is non-ambulatory and is in a power wheelchair for most of the day. He has no respiratory
symptoms, although his forced vital capacity is 43% of predicted. He has recently begun using
noninvasive positive pressure ventilation (NIPPV, often called a BiPAP device).
Patient #1 QOL Assessment
Average Total QOL Score:
7.37/10
Negative Emotion:
7.31/10
Interaction:
8.36/10
Intimacy:
6.71/10
Religiosity:
8/10
Physical:
8.33/10
Bulbar:
6.2/10
Normative data for individuals with ALS is provided in Table 6.3. BJ’s Total QOL assessment is
slightly above the reported mean QOL assessment. Overall, looking at the QOL score profile for
BJ, his scores are all relatively high. Despite his significant physical impairments, he reports his
physical symptoms as 8.33/10 which indicates that physical symptoms are not perceived as a
problem for BJ. His Bulbar score report is lower than the Physical score, and it is the lowest
domain score in his profile. His bulbar symptoms should be explored at this ALS Clinic
appointment. BJ’s Negative Emotion score is slightly above the reported average score for this
domain. His Interaction with People and the Environment Score is also high. BJs Religiosity
report is high, as is his Intimacy score. Despite his fairly advanced disease as measured by this
ALSFRS-R, BJ reports a high QOL.
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Patient #2
ML is a 46 year old woman, married with 2 young children. Her ALSFRS-R is 33/48. Her speech
is intelligible with repeating. She has some problems with secretions. She has normal eating
habits. ML is able to write legibly. She needs some assistance with activities of daily living. She
walks with assistance and reports no respiratory problems. Her forced vital capacity is 98% of
predicted.
Patient #2 QOL Assessment
Average Total QOL Score:
5.41/10
Negative Emotion:
3.69/10
Interaction:
6.36/10
Intimacy:
5.85/10
Religiosity:
1.25/10
Physical:
7.83/10
Bulbar:
7.2/10
ML’s average total QOL assessment is lower than average (Table 6.3). Viewing her QOL profile,
the domain scores that are particularly low relative to average values for ALS patients include
Negative Emotion, Interaction and Religiosity. During the ALS Clinic appointment, the team
evaluated ML for depression, suicidal tendencies, anxiety, concerns about the future and the
meaning of one’s life, and ability to cope. After a comprehensive evaluation, it was determined
that ML was depressed. Recommendations were made for ML to seek counseling, and a
prescription for an antidepressant was provided. ML also reported that she was not as social as
she used to be. ML had stopped joining her social groups for activities. Many of the social
groups she had previously interacted with belonged to her religious congregation. This change
in behavior was reflected in ML’s reported low Interaction score. ML also reported low
Religiosity. It was helpful to look at a previous QOL assessment for ML to examine if this domain
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score had changed from baseline. Previously, ML previously rated her Religiosity as 8/10. Her
Religiosity score is clearly a change from baseline. The Pastoral Care counselor explored this
with ML, who revealed that she felt abandoned by her religious congregation and was unable to
participate in many of the congregation’s activities. The counselor and ML discussed ways in
which ML could participate in congregation activities to feel a better sense of belonging.
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Chapter 6: Psychometrics
Introduction
This chapter presents the method used to validate the ALSSQOL-R and the results of the
analyses conducted. As a result of a review of the literature and the preliminary test
development and construction procedures described under “Development of the ALSSQOL-R,”
the ALSSQOL has established content and face validity. Principal Component Analysis of the
original ALSSQOL revealed six factors and the insignificance of 9 items which were subsequently
deleted.19 Because items of the original measure were removed and four items separated from
scorable items, it was necessary to collect new data on the ALSSQOL-R to determine if the
psychometric properties of the original measure were retained, and if the findings were reliable.
Hierarchical multiple regression tested the six factors’ ability to predict global QOL as judged by
the patient’s response to a single question derived from the McGill Quality of Life Instrument
(MQOL-SIS). Furthermore, the current study included additional measures which allowed the
construct validity of the ALSSQOL-R and its subscales to be tested. Construct validity was
established by testing concurrent validity (convergent and discriminant validity) with “gold
standard” measures relating to the factors of the ALSSQOL-R.
A description of the methods, factor structure tested by Confirmatory Factor Analysis, reliability
and validity statistics are followed by normative data. The ALSSQOL-R’s relation to other
standardized measures is described. This data substantiates the recommendations made in the
clinical interpretation section above.
Methods
Evaluation of the Psychometric Properties of the ALSSQOL
Participant Inclusion/Exclusion Criteria. A prospective study involving 12 American ALS clinics
(Appendix D) recruited individuals 18 years or older, fluent in English at the 6th grade level or
higher, with definite, probable, or probable laboratory-supported ALS by revised El-Escorial
criteria.22 Patients were excluded if they were judged by a physician or psychologist at the
center to have a dementia sufficient to preclude the granting of informed consent and
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participation in the study. Approval for the study was obtained from the institutional review
board at each of the centers, and all subjects provided informed consent.
Instruments Used at all Sites
All sites collected demographic information and administered the following measures of QOL,
function, and strength:
1. The ALS-Specific Quality of Life Questionnaire-Revised (ALSSQOL-R): The 50-item
version of the ALSSQOL (46 scorable items plus 4 additional items) was administered
to the patient in interview format by a psychologist, research coordinator, nurse, or
trained psychology graduate student, with family members out of the room. The
ALSSQOL-R total score represents the addition of all scorable items, after reversescoring is implemented. The ALSSQOLR Average Total Score is the ALSSQOL-R total
score divided by 46.
2. The McGill Quality of Life Single-Item Scale (MQOL-SIS):2-5 This global measure
consists of a single question in which patients rate their QOL over the preceding 2
days on a 0-10 scale. Although it appears as the first question on the ALSSQOL-R, it
is scored separately from the rest of the measure. To make it consistent with the
rest of the ALSSQOL-R, the time frame for which QOL is judged by the patient was
changed from 2 days to 7 days.
3. ALS Functional Rating Scale-Revised (ALSFRS-R):23 This is a 48-point scale consisting
of 12 items which assess bulbar, limb, and respiratory function. Scores range from 0
(worst function) to 48 (best function).
4. Manual muscle testing: Strength in four muscle groups (arm abductors, wrist
extensors, hip flexors, and ankle dorsiflexors, corresponding to proximal and distal
upper and lower extremity muscle groups, respectively) was measured and
recorded bilaterally for each patient using the Medical Research Council (MRC) Scale
of 0-5.24 A composite MRC score was calculated for each patient, consisting of the
sum of the MRC scores in each of these 8 muscle groups divided by 8. Scores range
from 0 (weakest) to 5 (strongest).
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Instruments Used at Selected Sites:
At least two sites each collected data using the following additional measures to test the
construct, convergent, and /or discriminant validity of the indicated factors of the ALSSQOL-R or
the total ALSSQOL-R score:
1. Total ALSSQOL-R score and subscale scores. Participants either completed the
World Health Organization QOL Instrument – Brief Version (WHOQOL-BREF, n=176)
or the ALS Assessment Questionnaire 40 (ALSAQ-40, n=214). The WHOQOL-BREF is
an abbreviated 26-item version of the WHOQOL-100, and was used in the validation
of the original ALSSQOL. Four domains are assessed: physical health, psychological
(including spirituality, religion, and personal beliefs), social relationships, and
environment. Scores are calculated for each domain.16 The ALSAQ-40 is a 40-item
measure of self-reported health-related QOL with five subscales: Eating and
Drinking, Communication, ADL/Independence, Physical Mobility, and Emotional
Functioning. Construct validity, internal reliability, and sensitivity to change have
been established for this measure.25
2. Negative Emotion. Participants in this arm of the study completed two measures of
psychological distress, the Brief Symptom Inventory-1826 (BSI-18; N = 74) and the
Center for Epidemiological Studies- Depression Scale27 (CESD; n =74), They also
completed the Social Problem-Solving Inventory-Revised: Short Form28 (SPSI-R; n =
73), a measure of social problem solving as a coping skill set. The BSI-18 is an 18item self-report measure of symptoms of anxiety, depression, and somatization
experienced by both medical and psychiatric patients. Items are rated on a fivepoint scale measuring degree of distress caused by each symptom (0, not at all; 4,
extremely). This measure is often used as a screening tool with medical patients, as
it has excellent psychometric properties and originated from the 53-item Brief
Symptom Inventory.29 The CES-D is a 20- item measure designed to assess
depressed mood by having respondents record how often in the past week they
have experienced listed symptoms (feelings or behaviors) according to a 4-point
Likert Type Scale. This measure has established validity and reliability when used
with a nonpsychiatric adult population.27 This measure is particularly useful with
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medical populations because few vegetative symptoms are assessed. The SPSI-R is a
25 item measure of social problem solving which examines individual’s ability to
identify adaptive solutions to problems in daily living.28 Social problem solving is
conceptualized as a skill set that represents one’s coping style and abilities. The
SPSR–I has established normative scores for elderly adults, and has been widely
used in research with patients with chronic illnesses such as cancer.30-31 The
measure is comprised of five scales including positive problem orientation, negative
problem orientation, rational problem-solving, impulsive/carelessness style, and
avoidance style.
3. Interaction with People and the Environment. This factor of the ALSSQOL-R was
compared to the following measures completed by participants in this arm of the
study: Satisfaction with Life Scale (SWLS; n = 79); Multidimensional Scale of
Perceived Social Support (MSPSS; n = 79). The SWLS is a 5-item measure that has
been widely used to measure global satisfaction with life in a variety of populations,
including 4 groups of older adults (averaging approximately 53 to 75 years of age).
Statements are endorsed according to a 5-point likert-type scale ranging from 1
(Strongly Disagree) to 7 (Strongly Agree). The SWLS has established positive
psychometric properties, including reliability over time, and internal consistency.32
The MSPSS is a subjective measure of perceived social support adequacy from
family, friends, and significant other.33 This measures includes 12 items assessing
the extent to which support is received from these three sources on a 7-point Likerttype scale ranging from 1 (very strongly disagree) to 7 (very strongly agree). Higher
scores are indicative of higher social support.
4. Religiosity. Participants in the “religiosity” arm of the study completed five brief
measures of aspects of religiosity or spirituality: the Functional Assessment of
Chronic Illness Therapy-Spiritual Well-Being Subscale (FACIT-SP-12; N = 138), the
Idler Index of Religiosity (IIR; N = 139), and three scales from the Fetzer Institute
report on the multidimensional measurement of religiousness/spirituality for use in
health research: Forgiveness, Daily Spiritual Experiences, and Overall Self-Rank
(N=140). The FACIT-Sp-12 is a 12-item measure of spirituality yielding two subscale
scores (Meaning/Peace, Faith in Illness) and a total score. It was developed for
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evaluation of QOL in patients with chronic illness. Respondents indicate how true
each statement is for them on a scale ranging from “0” (not at all) to “4” (very
much).17 The IIR is a four-item measure and consists of two items assessing public
religiousness and two items assessing private religiousness. Total scores range from
4 (least religious) to 17 (most religious).6 The Forgiveness, Daily Spiritual
Experiences, and Overall Self-Rank scales were developed by a national working
group supported by the Fetzer Institute in collaboration with the National Institute
on Aging.34 The forgiveness subscale includes three items and assesses the following
dimensions of this construct: feeling forgiven by God, forgiving others, and forgiving
oneself. This subscale was originated from the Judeo-Christian tradition, and
therefore, this should be considered when interpreting its relation to the ALSSQOL-R
constructs. Established psychometric properties of this subscale are limited,
although theoretically and conceptually the scale appears to be well-developed.
Daily Spiritual Experiences scale includes 6 items and represents the “individual’s
perception of the transcendent in daily life and the perception of interaction with,
or involvement of, the transcendent in life.”34 The focus is on experience rather than
cognitions, and the scale is intended to transcend religious boundaries. The Overall
Self-ranking scale includes two items inquiring about the extent one self-reports
being religious and/or spiritual. These three scales are imbedded within the Brief
Multidimensional Measure of Religiousness/Spirituality and preliminary data
suggests that within this measure adequate reliability and validity data exists for its
use.
5. Intimacy. This subscale of the ALSSQOL-R was assessed using the Personal
Assessment of Intimate Relationships (PAIR, n = 82). The PAIR is a measure of five
types of intimacy, assessed by two 36 – item measures. One measure assesses
perceived level of intimacy, and expected level of intimacy is measured by a second
questionnaire. Administering both scales allow us a score to be determined for
satisfaction by examining the discrepancy between the two. For the purpose of this
study, only the actual level of intimacy was assessed. Data was only collected from
the ALS patient, and not the partner. The following intimacies were measured:
emotional intimacy, social intimacy, sexual intimacy, recreational intimacy, and
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intellectual intimacy.35 The normative groups on which this measure was developed
include individuals ranging in age from 18 to 61 years, recruited from community
enrichment groups, and undergraduate class, and postgraduate extension classes.
Reliability and validity data was established based on a sample of 192 couples who
had been married between one and 37 years. This measure has been factor
analyzed, and has established reliability and validity data resulting from the
comparison of this measure to other couples’ adjustment scales that are standard to
the field. 36
6. Physical Functioning. Measures to assess validity of this domain included
several which are described above: the ALSFRS-R, Composite MRC, ALSAQ-40
Physical Mobility, Eating and Drinking, and ADL/Independence subscales, and
the WHOQOL-BREF physical health domain.
7. Bulbar Function: Measures used to assess validity of this domain included
several which are described above: the ALSAQ-40 Eating and Drinking
subscale and Communication subscale, and items 1-3 of the ALSFRS-R.
Sample Size and Statistical Methods
After collection at each center, data was sent to a central data collection center for entry and
analysis. A multimethod, multimatrix design was implemented. A confirmatory factor analysis
using Amos 16.0 was conducted to test the proposed model developed in the original ALSSQOLR
validation by principal component analysis. Chronbach’s alpha to determine internal
consistency, Pearson’s correlations, and measures of central tendencies and frequencies were
conducted. Generally, the ratio of five cases (participants) per variable is recommended to have
sufficient data for factor analysis.37 As such, the number of participants required to perform
factor analysis on the ALSSQOLR is 5 x 46, or 230 participants. Data collection for the ALSSQOLR
exceeded this minimum requirement because larger samples of data on collateral measures
were needed for validity testing of the factors, and only subsets of the overall sample completed
these as described above. Hierarchical multiple regression analysis was conducted using
subscale scores of the ALSSQOL-R as predictor variables and the MQOL-SIS as the criterion
variable. Since the ALSSQOL-R and the MQOL-SIS were completed at each collection site, this
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data set provided an ample sample size for adequate power to conduct multiple regression
analysis with an alpha set at .01 (by convention) and a medium effect size for more than the
determined number of factors/subscales (i.e., a minimum of 147 subjects are recommended for
multiple regression with 8 variables).38 The number of subjects necessary for the factor analysis
satisfied the number of subjects necessary to complete additional analyses of validity and
reliability. Statistical analyses was performed using statistical software from SPSS, Inc (SPSS
17.0, Chicago, IL).
Testing of Validity, Reliability, and Reproducibility
As a result of a review of the literature, initial test development and construction procedures
described in the Development section, the ALSSQOL-R has established content and face validity.
The MQOL-SIS was used to determine concurrent validity of the ALSSQOL-R. Although it is
argued that the MQOL-SIS is a broader, global measure of QOL, QOL researchers recommend
the use of global QOL measures in addition to health-related and/or psychosocial QOL
measures.39 Comparisons of the ALSSQOL-R to the WHOQOL-BREF domains and to the ALSAQ40 served to test the convergent validity of the ALSSQOL-R by comparing its data to two
additional reliable and valid measures of QOL. The ALSSQOL-R was compared to the BSI-18,
CES-D, composite MRC, and ALSFRS-R to test discriminant validity, as positive QOL was
hypothesized to represent more than the absence or inverse of psychological distress, physical
strength, or physical function, as also supported by previous analysis of the original ALSSQOL.
Each of the six factors of the ALSSQOL-R was compared to well-established measures with sound
psychometric properties to test convergent validity and construct validity. Since limited
psychological measures have been used with the ALS population, measures used to test
Interaction with People and the Environment and Intimacy were chosen for analysis based on
their construct and content similarity, although they had not been previously used with medical
populations similar to the ALS population. All measures used for these comparisons are
described above.
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Results
Personal Characteristics of the Sample
389 patients were recruited, of whom 229 (58.9%) were men and 160 (41.1%) were women.
Ages ranged from 27 to 88 years (median = 61.0, mean = 60.85, SD = 11.36). Duration of
symptoms at time of enrollment in the study averaged 39.7 months (SD = 39.24; median = 26
months; range = 3 to 232 months; N=324). Length of time from diagnosis to completion of study
questionnaires averaged 21.45 months (SD = 27.03; median = 12.5; range = 0 to 223 months; N=
362). Other demographic features of our patients are presented in Table 6.1.
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Table 6.1: Demographics of ALSSQOL-R Validation Sample
Age (Males) (n = 227)
M=60.45, SD=11.45; Range 33-84.
Age (Females)
(n=158)
M=61.42, SD=11.24; Range 27-88.
Education (n= 381)
Less than high school graduate: 21
Annual Household Income (n=375)
< $20,000: 30 (8.0%)
(5.5%)
High school graduate: 101 (26.5%)
$20,000-39,999: 87 (23.2%)
Some college: 67 (17.6%)
$40,000-59,999: 80 (21.3%)
2 year college degree: 20 (5.2%)
$60,000-$79,999: 55 (14.7%)
4 year college degree: 98 (25.7%)
$80,000 or more: 80 (21.3%)
Graduate degree: 64 (16.8%)
Prefer not to answer: 43 (11.5%)
Trade/technical school: 10 (2.6%)
Living Arrangements (n=387)
Race (n=388)
With a spouse or partner 298 (77%)
Caucasian: 352 (90.7%)
With another relative 21 (5.4%)
Hispanic: 11 (2.8%)
With a friend or other non-related
African American: 16 (4.1%)
individual 8 (2.1%)
Alone 47 (12.1%)
Asian/Pacific Islander: 3 (.8%)
Long-term care facility 7 (1.8%)
Other: 3 (0.8%)
With significant other and
Preferred not to Answer: 3 (.8%)
another relative 6 (1.6%)
Marital Status (n=386)
Employment (n=375)
301 (78%)
Employed part time: 28 (7.5%)
Divorced 38 (9.8%)
Employed full time: 50 (13.3%)
Separated 3 (0.8%)
Retired: 168 (48.8%)
Widowed 28 (7.3%)
Unemployed: 6 (1.6%)
Never married 16 (4.1%)
On disability: 107 (28.5%)
Not employed prior to ALS: 14 (3.7%)
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Retired and Disabled: 2 (.5%)
Factor Analysis
The ALSSQOL-R consists of 46 items loaded on 6 factors that account for QOL; 4 contingency
items not answered by all participants were not scored, but are clinically useful for monitoring
patients individually. The six factors’ labels and internal consistency appear in Table 6.2.
(Comparison of Chronbach Alpha reliability estimates from the ALSSQOL to the ALSSQOL-R show
that these statistics are stable and not significantly different.)
Table 6.2: ALS-Specific Quality of Life Questionnaire (ALSSQOLR): Factors and Internal
Consistency
Factor (number of items)
Item Numbers on ALSSQOLR
Internal Consistency*
Negative Emotion (13 items)
11, 12, 13, 17, 18, 19, 21, 22, 25,
0.91
28, 31, 32, 34
Interaction with People and
14, 15, 16, 20, 26, 27, 30, 33 , 36,
the Environment (11 items)
37, 40
Intimacy (7 items)
39, 42, 43, 45, 46, 48, 49
0.81
Religiosity (4 items)
23, 29, 35, 38
0.92
Physical Symptoms (6 items)
1, 2, 7, 8, 9, 10
0.71
Bulbar Function (5 items)
3, 4, 5, 6, 24
0.83
0.87
*Chronbach’s alpha
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Confirmatory factor analyses were conducted using Amos 16.0 of SPSS 17.0. In evaluating each
model, we generated goodness of fit statistics to determine how well our models (6 factors of
QOL) matched the data; the model converged in 12 iterations. Of note, statistics used to
measure goodness of fit comprise an area of hot debate and therefore are used with caution.40
Three statistics of goodness of fit are presented: chi-square divided by degrees of freedom (i.e.,
chi-square/df), Comparative Fit Index (CFI), and Root Mean Square Error of Approximation
(RMSEA). Desired values are as follows: a) for chi/square/df<2.0, b) for CFI>=.9, and c) for
RMSEA<= .06,41 although 0.1 or less is acceptable.42 Our model resulted in goodness of fit indices
as follows: X2 = (2985.91/974)= 3.06, p = .000. CFI =.766, and RMSEA = .069, 90% Confidence
Interval: .066 - .072, (PCLOSE =.000). These results are reasonable, considering the sample size
used for this analysis is relatively small. Table 6.21 shows factor loadings of items by factor, with
the standard error of the estimate, and squared multiple correlations. This data supports the
factor structure and shows the relationships among items and factors. A zero-order correlation
table is represented in Table 6.22 to show the relationship between ALSSQOL-R items and the
identified factor on which they load. Table 6.23 depicts the relationships between subscales,
according to this model. As expected, most correlations are low, since the original measure was
factor analyzed using principal component analysis with orthogonal varimax rotation.19 Negative
Emotion and Interaction with People and the Environment have a greater degree of shared
variance due to the psychosocial nature of both of these constructs.
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Table 6.21 . Maximum Likelihood Estimates, Squared Multiple Correlations, and Standardized
Regression Weights for ALSSQOLR Items by Factors
Maximized
Standard Error Squared
Standardized
Likelihood
Multiple
Regression
Estimates
Correlations
Weights
Negative Emotion
ALSSQOLR 34
1.000
.624
.790
ALSSQOLR 28
.918
.068
.426
.652
ALSSQOLR 22
1.032
.058
.649
.806
ALSSQOLR 12
.769
.051
.542
.736
ALSSQOLR 32
.994
.060
.588
.767
ALSSQOLR 25
.791
.074
.286
.535
ALSSQOLR 31
.969
.069
.451
.672
ALSSQOLR 19
.662
.052
.417
.646
ALSSQOLR 11
.671
.058
.348
.590
ALSSQOLR 13
.858
.065
.426
.652
ALSSQOLR 21
.676
.063
.295
.544
ALSSQOLR 17
.618
.071
.196
.443
ALSSQOLR 18
.569
.064
.209
.457
Interaction w/
People &
Environment
ALSSQOLR 33
1.000
.474
.689
ALSSQOLR 16
.879
.069
.540
.735
ALSSQOLR 26
.983
.076
.515
.718
ALSSQOLR 30
.853
.091
.253
.503
ALSSQOLR 15
.930
.081
.427
.653
ALSSQOLR 27
1.094
.091
.437
.661
ALSSQOLR 20
.882
.090
.296
.544
ALSSQOLR 36
.723
.073
.297
.545
ALSSQOLR 40
.803
.092
.230
.480
ALSSQOLR 37
1.033
.083
.481
.693
ALSSQOLR 14
.748
.068
. 386
.622
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Intimacy
Maximized
Likelihood
Estimates
Standard Error
Squared
Multiple
Correlations
Standardized
Regression
Weights
.612
.782
ALSSQOLR 45
1.000
ALSSQOLR 42
.869
.070
.492
.702
ALSSQOLR 46
1.040
.071
.551
.742
ALSSQOLR 48
.761
.084
.227
.476
ALSSQOLR 43
.885
.077
.453
.673
ALSSQOLR 49
.678
.079
.214
.463
ALSSQOLR 39
.531
.062
.224
.473
.289
.538
Physical Symptoms
ALSSQOLR 07
1.000
ALSSQOLR 08
1.123
.149
.295
.543
ALSSQOLR 10
1.242
.154
.407
.638
ALSSQOLR 02
1.236
.143
.468
.684
ALSSQOLR 01
.798
.126
.184
.429
ALSSQOLR 09
.909
.138
.197
.444
.260
.510
Bulbar Function
ALSSQOLR 03
1.000
ALSSQOLR 05
1.408
.150
.501
.708
ALSSQOLR 24
1.522
.177
.414
.643
ALSSQOLR 04
1.593
.162
.664
.815
ALSSQOLR 06
2.041
.208
.716
.846
.780
.883
Religiosity
ALSSQOLR 29
1.000
ALSSQOLR 35
1.019
.045
.727
.853
ALSSQOLR 23
1.078
.043
.816
.903
ALSSQOLR 38
1.077
.053
.656
.810
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Table 6.22 Correlations between ALSSQOLR Items and Factors
(Completely Standardized Solution)
Negative
Interaction w/ Intimacy Physical
Emotion
People &
Symptoms
Environment
Item Number
ALSSQOLR 18
.457
ALSSQOLR 17
.443
ALSSQOLR 21
.544
ALSSQOLR 13
.652
ALSSQOLR 11
.590
ALSSQOLR 19
.646
ALSSQOLR 31
.672
ALSSQOLR 25
.535
ALSSQOLR 32
.767
ALSSQOLR 12
.736
ALSSQOLR 22
.806
ALSSQOLR 28
.652
ALSSQOLR 34
.790
ALSSQOLR 14
.622
ALSSQOLR 37
.693
ALSSQOLR 40
.480
ALSSQOLR 36
.545
ALSSQOLR 20
.544
ALSSQOLR 27
.661
ALSSQOLR 15
.653
ALSSQOLR 30
.503
ALSSQOLR 26
.718
ALSSQOLR 16
.735
ALSSQOLR 33
.689
ALSSQOLR 39
.473
ALSSQOLR 49
.463
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Function
Religiosity
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ALS Specific Quality of Life: User’s Guide
Negative
Emotion
ALSSQOLR 43
Interaction w/
People &
Environment
Intimacy
Physical
Symptoms
Bulbar
Function
Religiosity
.673
ALSSQOLR 48
.476
ALSSQOLR 46
.742
ALSSQOLR 42
.702
ALSSQOLR 45
.782
ALSSQOLR 09
.444
ALSSQOLR 01
.429
ALSSQOLR 02
.684
ALSSQOLR 10
.638
ALSSQOLR 08
.543
ALSSQOLR 07
.538
ALSSQOLR 06
.846
ALSSQOLR 04
.815
ALSSQOLR 24
.643
ALSSQOLR 05
.708
ALSSQOLR 03
.510
ALSSQOLR 38
.810
ALSSQOLR 23
.903
ALSSQOLR 35
.853
ALSSQOLR 29
.883
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Table 6.23 Correlations between Factors on ALSSQOL-R (p = .000 for all)
Negative
Emotion
Negative
Emotion
Interaction
Religiosity
Interaction
Religiosity
w/ People
and
Environment
.591
.170
.331
Intimacy
Physical
Symptoms
Bulbar
Function
.288
.502
.113
.439
.270
.111
.298
.051
-.074
.150
.116
Intimacy
Physical
.263
Bulbar
Normative Data
Normative data is presented for the entire sample (See Table 6.3) and by gender (See Table
6.3a, Table 6.3b), although the only statistically significant differences between means by
gender were on Interaction with People and the Environment and Religiosity subscales. Analyses
comparing subscale and total scores on the ALSSQOL-R across three age groups (less than 45
years, 45.1 through 65, 65.1 through oldest) revealed no differences across groups, except in
bulbar function, therefore, stratifying the sample to provide age-based normative data would
not add value. Likewise, ALSFRS-R scores were not correlated with ALSSQOL-R subscales or total
scores, except for Physical Symptoms and Bulbar Function, thus, stratifying the sample by
physical functioning levels also does not seem to add value.
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Table 6.3 Normative/Mean scores of strength, function and quality of life in total patient
sample completing the ALSSQOLR
Measure
Mean (SD)
Range
ALSFRS-R (N=385)
(33.11) 7.95
6-48
Composite MRC (N=389)
3.59 (1.1)
0-5.0
MQOL-SIS (N=385)
6.85 (1.99)
0-10
ALSSQOL-R average total score (46-items) (N=377)
6.83 (1.2)
3.30-9.52
ALSSQOLR-Negative Emotion Subscale (N=388)
6.67 (2.0)
.77-10
ALSSQOLR-Interaction w/People & Envt (N=388)
8.17 (1.5)
2.64-10
ALSSQOLR-Intimacy (N=392)
5.85 (2.1)
.43-10
ALSSQOLR-Religiosity (N=388)
6.58 (3.4)
.00-10
ALSSQOLR-Physical Symptoms (N=392)
6.70 (1.8)
1-10
ALSSQOLR-Bulbar Function (N=392)
7.26 (2.4)
.00-10
ALSSQOLR-ALSSQOLR Total (N=377)
314.40 (56.7)
152.00-438.00
ALSRFS-R = ALS Functional Rating Scale Score-Revised; MRC = Medical Research Council; MQOLSIS = McGill Quality of Life Single Item Scale; ALSSQOL-R = ALS-Specific Quality of Life-Revised
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Table 6.3a Normative/Mean scores of quality of life in male patient subsample completing the
ALSSQOL-R
Measure
Mean (SD)
Range
MQOLSIS (N=227)
6.80 (1.90)
1-10
ALSSQOL-R average total score
6.80 (1.22)
3.30-9.30
ALSSQOLR-Negative Emotion Subscale (N=225)
6.77 (2.0)
.77-10
ALSSQOLR-Interaction w/People & Envt (N=225)
7.36 (1.5)
2.64-10
ALSSQOLR-Intimacy (N=228)
5.99 (2.1)
.86-10
ALSSQOLR-Religiosity (N=226)
6.15 (3.5)
.00-10
ALSSQOLR-Physical Symptoms (N=228)
6.75 (1.7)
1.17-10
ALSSQOLR-Bulbar Function (N=228)
7.30 (2.4)
.60-10
ALSSQOLR Total (N=217)
276.00 (56.14)
152.00-428.00
(46-items) (N=217)
ALSRFS-R = ALS Functional Rating Scale Score-Revised; MRC = Medical Research Council; MQOLSIS = McGill Quality of Life Single Item Scale; ALSSQOL-R = ALS-Specific Quality of Life-Revised
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Table 6.3b Normative/Mean scores of quality of life in female patient subsample completing
the ALSSQOL-R
Measure
Mean (SD)
Range
MQOLSIS
6.92 (2.11)
0-10
ALSSQOL-R average total score (46-items) (N=156)
6.86 (1.26)
3.67-9.52
ALSSQOLR-Negative Emotion Subscale (N=159)
6.52 (2.1)
.92-10
ALSSQOLR-Interaction w/People & Envt (N=159)
7.64 (1.5)
3.27-10
ALSSQOLR-Intimacy (N=160)
5.64 (2.2)
.43-10
ALSSQOLR-Religiosity (N=158)
7.22 (3.2)
.00-10
ALSSQOLR-Physical Symptoms (N= 160)
6.58 (1.8)
1.00-10
ALSSQOLR-Bulbar Function (N=160)
7.15 (2.5)
.00-10
ALSSQOLR Total (N=156)
315.78 (57.87)
169.00-438.00
ALSRFS-R = ALS Functional Rating Scale Score-Revised; MRC = Medical Research Council; MQOLSIS = McGill Quality of Life Single Item Scale; ALSSQOL-R = ALS-Specific Quality of Life-Revised
Instrument
Validation
Multiple correlations are presented in Table 6.4. With regard to concurrent validity, the
ALSSQOL-R correlated positively with the MQOL-SIS, suggesting that 58% of the variance in the
single-item self-report of QOL is explained by the ALSSQOL-R. Thus, the ALSSQOL-R explained
more of the variance in the MQOL-SIS than the ALSAQ-40 total scale score, any of the WHOQOLBREF domains, or the ALSAQ-40 subscales (Table 6.5). Convergent validity was demonstrated
via the positive correlation of the ALSSQOL-R average total score with the four WHOQOL-BREF
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domains Table 6.4). When testing for discriminant validity, the ALSSQOL-R average total score
revealed very weak correlations with manual muscle testing as measured by the composite MRC
(r = 0.094, p = 0.071 (ns)) and with the ALSFRS-R (r = 0.22, p=0.000), similar to the correlations of
the MQOL-SIS with composite MRC (r = 0.18, p = 0.000) and with the ALSFRSR (r = 0.19, p =
0.000). This is consistent with our previous studies43,44 and validation of the original ALSSQOL,19
which indicated that QOL is largely determined by factors other than physical functioning.
Additional testing of convergent validity by comparison of the six ALSSQOL-R subscales to other
measures revealed a number of significant correlations (Table 6.6).
Table 6.4. Correlations (Pearson product moment coefficients) between various quality of life
measures in patients with ALS
WHOQOLWHOQOLWHOQOLMQOL-SIS ALSAQWHOQOLEnvironment
Psychological
Social
40
Physical
Relationships
Health
ALSSQOL-R
0.58
-.049
0.54
0.68
0.58
0.46
P=0.000
MQOL-SIS
P=0.000
P=0.000
P=0.000
P=0.000
P=0.000
-0.37
0.50
0.55
0.36
0.31
P=0.000
P=0.000
P=0.000
P=0.000
P.000
MQOL-SIS = McGill Quality of Life Single Item Scale; SEIQoL-DW – Schedule for the Evaluation of
Individual QOL, Direct Weighting; WHOQOL = World Health Organization Quality of Life
Instrument; ALSSQOL = ALS-Specific Quality of Life score
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Table 6.5 Correlations (Pearson Product-Moment Coefficients) between MQOLSIS and ALSAQ40 subscales
ALSAQ subscale
Pearson r
p
Eating and Drinking
NS
Communication
NS
Physical Mobility
-0.222
P=0.000
ADL index
-0.258
P=0.000
Emotional Reactions
-0.507
p=0.000
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Table 6.6. Correlations (r=Pearson product moment coefficients) between various ALSSQOLR
subscales and other measures in patients with ALS
ALSSQOLR subscale
Measure used for
Correlation
Number of
convergent validity
coefficient
subjects
(Pearson)*
Negative emotion
WHOQOL-BREF
0.719
172
psychological domain
ALSAQ40 emotional
-0.784
211
reactions scale
CES-D
-0.843
72
BSI depression scale
-0.788
72
BSI anxiety scale
-0.590
72
BSI somatization scale
-0.424
72
SPSI-R NPO
-0.431
71
SPSI-R PPO (discrim val)
-0.220, p = .67
71
Interaction with
people and the
environment
Intimacy
Religiosity
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WHOQOL-BREF social
relationships
0.614
162
WHOQOL-BREF
environment
Satisfaction with Life Scale
(SWLS)
MSPSS Significant Other
MSPSS Family
MSPSS Friends
MSPSS total score
0.515
162
.536
77
.409
.513
.280
.484
77
77
77
77
WHOQOL-BREF social
relationships
PAIR emotional intimacy
subscale
PAIR social intimacy
subscale
PAIR sexual intimacy
subscale
PAIR intellectual intimacy
subscale
PAIR recreational intimacy
subscale
PAIR conventional intimacy
subscale
0.410
166
0.310, p =.005
82
0.409
81
0.521
76
0.391
81
0.369
82
0.376
81
Fetzer total score
Fetzer forgiveness scale
Fetzer Daily Spiritual
-0.770
-0.476
-0.734
121
140
139
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ALS Specific Quality of Life: User’s Guide
Experience
Fetzer Overall Self-Rank
Idler public subscale
Idler private subscale
Idler total score
Facit Meaningfulness
Facit Faith total
FACIT SP 12 item scale
Physical symptoms
Bulbar function
-0.462
0.563
0.802
0.707
0.351
0.766
0.581
140
139
139
139
139
139
138
WHOQOL-BREF physical
health
ALSAQ40- physical mobility
ALSAQ40-eating and
drinking
ALSAQ40-ADL index
ALSFRSR
Composite MRC
0.638
173
-0.432
-0.179, p = .009
212
213
-0.367
0.374
0.222
213
384
388
ALSFRSR
ALSAQ40-eating and
drinking
ALSAQ40-communication
0.384
-0.696
384
212
-0.764
213
*p<0.001 for all correlations in table, except where noted.
As expected, the ALSSQOL-R factor “Negative Emotion” strongly correlated with the WHOQOLBREF’s psychological domain, with the CES-D and the BSI depression and anxiety subscales.
Analyses of the Negative Emotion scores by the ALS patients in comparison to their BSI-18
depression, anxiety, and somatization subscale scores suggest that patients who score 6.23 or
lower on the Negative Emotion subscore should be further evaluated for depression and
anxiety. This cutoff score was derived by the following procedure and analyses. The ALSSQOL-R
data was separated into male and female subsets so that BSI-18 scores could be compared to
the norm scores provided in the BSI-18 manual, which is stratified by sex. The ALSSQOL-R
datasets were then filtered to contain only persons who scored >=7 on the BSI-18 depression
scale, and subsequently the BSI-18 anxiety scale and the BSI-Global Severity Index, which is the
equivalent to the transformed T score on the BSI-18 of 63 (or greater). This score is thought to
identify “caseness” (when 2 subscales of the BSI or the total BSI-Global Severity Index are 63 or
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ALS Specific Quality of Life: User’s Guide
over) as compared to the Community Sample.29 Caseness suggests that these persons are a
“positive case” or “at risk” for depression, anxiety, or psychological distress. The ALSSQOL-R
score of 6.23 represents a conservative cutoff score equal to or under which most all persons
scoring in the “caseness” range on the BSI would be captured. Of note, there was a slight
discrepancy between male and female cutoff scores, but given the relatively small samples from
which this data was drawn (males, N=48; females, N= 21), and compared to similar data from
the original ALSSQOL and BSI dataset, it seemed prudent to choose the more conservative cutoff
that would be less likely to miss distressed individuals at the risk of possibly screening a few
additional patients than needed.
The moderate strength of the correlations between the factor “Interaction with People and the
Environment” and two of the WHOQOL-BREF subscales suggests that while there are
similarities, the ALSSQOL-R subscale provides slightly different information. This subscale
correlated moderately and significantly with the SWLS and the significant other and family MPSS
scales, as expected, but only had a weak correlation with the MPSS friends scale. These
relationships suggest that the ALSSQOL-R Interaction subscale may include these constructs
within this broader scale, but offers additional information as well.
The ALSSQOL-R “Intimacy” subscale has the strongest significant relationship with the PAIR
Sexual Intimacy subscale, and shares low to moderate variability with other subscales of the
PAIR, and the WHOQOL Social Relationships domain. However, when individual items of the
ALSSQOLR were analyzed in comparison to PAIR subscales, and when items were combined
according to desire, experience, and satisfaction with each type of intimacy (emotional, physical,
sexual), the satisfaction items correlated most strongly with the PAIR subscales. Analyzing item
to subscale correlations may inflate the chance of a Type I statistical error, and is interpreted
with caution. However, this post hoc analysis was conducted to aid in understanding the
ALSSQOLR Intimacy subscale more clearly. It is concluded that this subscale is possibly offering
unique information (as provided by the additional questions on the ALSSQOL-R Intimacy
subscale) about intimacy in this population compared to other available measures. Alternatively,
it is noted that the ALS participants reported higher mean scores on the Satisfaction with
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Intimacy scale, suggesting that either the comparative norm scores of the PAIR samples are not
appropriate for comparison to an older population with medical concerns, such as individuals
with ALS, or the nature of administering the PAIR via interview has negatively affected the
validity of the measure by, perhaps, eliciting inflated (“fake good”) responses. Thus, while it
appears that the PAIR suggests the ALSSQOL-R Intimacy subscale focuses highly on sexual
intimacy, further evaluation of this construct in future studies is indicated.
The ALSSQOL-R “Religiosity” component strongly correlated with several of the FACIT-SP and
Fetzer subscales and the Idler subscales and total score. However, Religiosity had only small
correlations with the Fetzer Forgiveness and Facit Meaningfulness subscales, offering some
discriminant validity information. Further analysis revealed that the ALSSQOL-R Religiosity
subscale correlated highly with the Faith in Illness Scale of the FACIT-SP-12 (r = .77, p =.000,
N=139), but not with the FACIT-SP-12 Meaningfulness scale (r =.35, p=.000, N=139). Examination
of the items on these FACIT-SP-12 scales provide a context for understanding these statistics.
The Faith in Illness subscale offers statements for endorsement as follows, “I find comfort in my
faith or spiritual beliefs,” “I find strength in my faith or spiritual beliefs,” “My illness has
strengthened my faith or spiritual beliefs,” “I know that whatever happens with my illness,
things will be ok.” The Meaningfulness scale includes the following statements, “I feel peaceful,”
“I have reason for living,” “My life has been productive,” “I have trouble feeling peace of mind,”
“I feel a sense of purpose in my life,” “I am able to reach down deep into myself for comfort,” “I
feel a sense of harmony within myself,” “My life lacks meaning and purpose.” The
Meaningfulness subscale correlated strongly with the ALSSQOL-R Negative Emotion subscale,
suggesting a strong relationship (.729, p=.000, N= 139) exists between negative emotion and
existential concerns. The Faith subscale had only a small correlation with Negative Emotion
(.391, p=.000, N=139).
The ALSSQOLR “Physical Symptoms” subscale positively correlated with the WHOQOL-BREF
physical health domain, but only slightly with the composite MRC score, and some of the
ALSAQ-40 subscales. It is important to recognize that the ALSSQOL-R Physical Symptoms
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subscale reflects “How much of a problem” the physical symptoms are for individuals, rather
than how much of a physical disability they have, according to objective measures.
“Bulbar Function” as measured by the ALSSQOLR subscale, correlated strongly with the
ALSAQ40 Communication subscale and with the ALSAQ-40 Eating/Drinking Subscale. The
correlation between the Bulbar Function subscale of the ALSSQOL-R and the total ALSFRS-R
score was weaker, as expected, since the total score includes other physical symptoms.
Using hierarchical multiple regression analysis with ALSSQOL-R subscale scores as predictors,
and the MQOL-SIS as the criterion variable, Negative Emotion, Physical Symptoms, and Intimacy
explained 37%, 2%, and 1%, respectively, of the variance in self-reported quality of life (F(3, 371)
= 82.44, p = .000); Satisfaction with People and the Environment, Religiosity, and Bulbar
Function did not enter into this equation. These findings are similar to the analyses conducted
with the original ALSSQOL. However, these variables are still considered significant contributors
to the understanding of QOL, as indicated by ALS patients in previous interviews and studies.
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Chapter 7: Concluding Comments
This manual describes the ALSSQOL-R scale designed to assess QOL in individuals with ALS. The
ALSSQOL-R has been developed and validated for clinical and research use. The ALSSQOL-R is a
tool for assessing QOL and the contributing domains at a single point and over time in ALS
individuals and groups. Use of this tool will allow further questions to be asked about the
impact of ALS on QOL, the relationships within each domain and between domains over time,
and the effects of clinical interventions on QOL for individuals and groups.
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References
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for assessing quality of life in ALS: strengths and limitations. Amyotroph Lateral Scler Other
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1991;3:433-437.
19. Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The
ALSSQOL: Balancing physical and nonphysical factors in assessing quality of life in ALS.
Neurology 2006;67:1659-1664.
20. Stephens HE, Green B, Bremer B, Felgoise S, Walsh S, Simmons Z. A pilot study to evaluate
the reliability of administering the ALS-specific quality of life instrument – revised (ALSSQOLR) in a self-administered format vs. interview based format. Amyotrophic Lateral Sclerosis
Other Motor Neuron Disord 2007;8(Supp 1):103-104[abstract].
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23. Cedarbaum JM, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating
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approach to clinical intervention (2nd ed.). New York: Springer; 1999.
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efficacy of problem-solving therapy for distressed adult cancer patients. J Consult Clin
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1985; 49: 71-75.
33. Zimet GD, Dahlem NW, Zimet SG, & Farley GK. The multidimensional scale of perceived
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34. Fetzer Institute,National Institute on Aging Working Group. Multidimensional measurement
of religiousness/spirituality for use in health research. Kalamazoo, MI: Fetzer Institute;
2003.
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36. Olson DH, Schaefer MT. PAIR: Personal Assessment of Intimacy in Relationships Manual.
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37. Tabachnick BG, Fidell LS. Using Multivariate Statistics, 2nd Edition. New York: Harper Collins;
1989.
38. Cohen JA. Power primer. Psychological Bulletin 1992;112:155-159.
39. Moons P, Van Deyk K, Budts W, De Geest S. Caliber of quality-of-life assessments in
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40. Thorndike RM. Would the real factors of the Stanford-Binet Fourth Edition Please Come
Forward? J Psychoed Assess 1990;8:412-435.
41. Hu, L., & Bentler, P.M. Cutoff criteria for fit indexes in covariance structure analysis:
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analysis in test validation research. J Consult Clin Psych 1987;55:584-594.
43. Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on
factors other than strength and physical function. Neurology 2000;55:388-392.
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as physical function declines. Neurology 2001;56:442-444.
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Appendix A: ALSSQOL-R Instrument
ALS-Specific Quality of Life Questionnaire-Revised
Participant ID# ____________________
Date: __________________________
Instructions:
The questions in this questionnaire begin with a statement followed by two opposite answers.
Numbers extend from one extreme answer to its opposite. Please circle the number between 0
and 10 which is most true for you. There are no right or wrong answers. Completely honest
answers will be most helpful.
EXAMPLE:
Not at All
I am hungry.
0
Extremely
1
2
3
4
5
6
7
8
9
10
If you are not even a little bit hungry, you should circle 0.
If you are a little hungry (you just finished a meal but still have room for dessert), you might
circle 1, 2, or 3
If you are feeling moderately hungry (because mealtime is approaching), you might circle 4, 5, or
6.
If you are very hungry (because you haven’t eaten all day), you might circle a 7, 8, or 9.
If you are extremely hungry, you should circle 10.
________________________________________________________________________
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BEGIN HERE:
Please assess your overall quality of life over the past week (7 days):
Very bad
Excellent
Considering all parts of my life –
physical, emotional, social,
spiritual, and financial – over
the past week, the quality of my
life has been.
0
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1
2
3
4
5
6
7
8
9
10
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ALS Specific Quality of Life: User’s Guide
Please rate the following symptoms and experiences according to how much of a problem each
one has been for you. Please respond about how you have felt or what you have experienced
over the past week using the scale provided.
Tremendo
us
Problem
No
Problem
1.
Pain
0
1
2
3
4
5
6
7
8
9
10
2.
Fatigue
0
1
2
3
4
5
6
7
8
9
10
3.
Eating
0
1
2
3
4
5
6
7
8
9
10
4.
Excessive Saliva
0
1
2
3
4
5
6
7
8
9
10
5.
Mucous in My
Throat
0
1
2
3
4
5
6
7
8
9
10
6.
Speaking
0
1
2
3
4
5
6
7
8
9
10
7.
My Strength and
Ability to Move
0
1
2
3
4
5
6
7
8
9
10
8.
Sleep
0
1
2
3
4
5
6
7
8
9
10
9.
Bowel and
Bladder
(Constipation,
Diarrhea, Poor
Control)
0
1
2
3
4
5
6
7
8
9
10
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Please rate the following statements according to how strongly you agree or how strongly you
disagree with each of them. Please respond about how you have felt or what you have
experienced over the past week.
Strong
ly
Agree
Strongly
Disagree
10.
I have felt physically terrible.
0
1
2
3
4
5
6
7
8
9
10
11.
My life has been purposeful
and meaningful.
0
1
2
3
4
5
6
7
8
9
10
12.
I have been coping well with
my illness.
0
1
2
3
4
5
6
7
8
9
10
13.
I believe I have control over my
life.
0
1
2
3
4
5
6
7
8
9
10
14.
When I have thought about my
life, I thought that my life to
this point has been worthwhile.
0
1
2
3
4
5
6
7
8
9
10
15.
The world has been caring and
responsive to my needs.
0
1
2
3
4
5
6
7
8
9
10
16.
I have felt supported.
0
1
2
3
4
5
6
7
8
9
10
17.
ALS has interfered with the
important things in my life.
0
1
2
3
4
5
6
7
8
9
10
18.
The past week has been a gift.
0
1
2
3
4
5
6
7
8
9
10
19.
I have felt good about myself as
a person.
0
1
2
3
4
5
6
7
8
9
10
20.
When I have thought about my
whole life, I thought that I have
achieved my life’s goals.
0
1
2
3
4
5
6
7
8
9
10
21.
Whatever the future holds, I
know that things will be ok.
0
1
2
3
4
5
6
7
8
9
10
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Please rate the following statements according to how much you have felt or experienced what
is described. Please respond about how you have felt or what you have experienced over the
past week.
Very
Much
Not at All
22.
I have been depressed.
0
1
2
3
4
5
6
7
8
9
10
23.
My religion has been a source
of strength or comfort to me.
0
1
2
3
4
5
6
7
8
9
10
24.
Communication has been a
problem.
0
1
2
3
4
5
6
7
8
9
10
25.
When I have thought of the
future, I have been afraid.
0
1
2
3
4
5
6
7
8
9
10
26.
Relationships with those
closest to me have been
satisfying.
0
1
2
3
4
5
6
7
8
9
10
27.
I have been interested in other
people or things.
0
1
2
3
4
5
6
7
8
9
10
28.
I have been nervous or
worried.
0
1
2
3
4
5
6
7
8
9
10
29.
I consider myself to have been
religious or spiritual.
0
1
2
3
4
5
6
7
8
9
10
30.
I enjoyed spending time with
other people.
0
1
2
3
4
5
6
7
8
9
10
31.
I have felt helpless.
0
1
2
3
4
5
6
7
8
9
10
32.
I have felt hopeless.
0
1
2
3
4
5
6
7
8
9
10
33.
I have enjoyed the beauty of
my surroundings.
0
1
2
3
4
5
6
7
8
9
10
Please rate the following statements according to how often you have felt or experienced what
is described. Please respond about how you have felt or what you have experienced over the
past week.
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Very
Often
Never
34.
I have felt sad.
0
1
2
3
4
5
6
7
8
9
10
35.
I have prayed to God.
0
1
2
3
4
5
6
7
8
9
10
36.
I have laughed.
0
1
2
3
4
5
6
7
8
9
10
37.
I was excited about or looked
forward to something.
0
1
2
3
4
5
6
7
8
9
10
38.
I have engaged in religious
practices in my home or in my
community.
0
1
2
3
4
5
6
7
8
9
10
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ALS Specific Quality of Life: User’s Guide
The following statements are about social contact (for example, visits from family and friends).
Please think about your experiences with or how you have felt about social contact in the past
week, and use the scales provided below to respond.
39.
40.
My desire for social contact has
been strong.
Family and friends have visited
me.
Strongly
Disagree
0
Strong
ly
Agree
1
2
3
4
5
6
7
8
9
Very
Often
Never
0
10
1
2
3
4
5
6
7
8
9
10
Visits from family and friends
have been satisfying.
41.
(If you have not had any visits,
please leave the response
section blank).
Very
Much
Not at All
0
1
2
3
4
5
6
7
8
9
10
The following statements are about emotional intimacy (for example, sharing deep, private
thoughts; feeling connected). Please think about your experiences with or how you have felt
about emotional intimacy in the past week, and use the scales provided below to respond.
42.
43.
My desire for emotional
intimacy has been strong.
I have shared emotional
intimacy with others.
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Strongly
Disagree
0
Strong
ly
Agree
1
2
3
4
5
6
7
8
9
Very
Often
Never
0
10
1
2
3
4
5
6
7
8
9
10
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Emotional intimacy with others
has been satisfying.
44.
(If you have not shared
emotional intimacy, please
leave the response section
blank).
Very
Much
Not at All
0
1
2
3
4
5
6
7
8
9
10
The following statements are about physical intimacy (for example, touching, hugging, kissing).
Please think about your experiences with or how you have felt about physical intimacy in the
past week, and use the scales provided below to respond.
45.
46.
My desire for physical intimacy
has been strong.
I have shared physical intimacy
with others.
Strong
ly
Agree
Strongly
Disagree
0
1
2
3
4
5
6
7
8
9
Very
Often
Never
0
10
1
2
3
4
5
6
7
8
9
10
Physical intimacy with others
has been satisfying.
47.
(If you have not shared physical
intimacy, please leave the
response section blank).
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Very
Much
Not at All
0
1
2
3
4
5
6
7
8
9
10
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The following statements are about sexual intercourse. Please think about your experiences
with or how you have felt about sexual intercourse in the past week, and use the scales
provided below to respond.
48.
49.
My desire for sexual
intercourse has been strong.
I have shared sexual
intercourse with others.
Strongly
Disagree
0
Strong
ly
Agree
1
2
3
4
5
6
7
8
9
Very
Often
Never
0
10
1
2
3
4
5
6
7
8
9
10
My sexual relationship has
been satisfying.
50.
(If you have not had sexual
intercourse, please leave the
response section blank).
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Very
Much
Not at All
0
1
2
3
4
5
6
7
8
9
10
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Appendix B: ALSSQOL-R Hand Score Sheet
Page 1
Subject ID#:
Date Obtained: _ _/_ _/_ _ _ _
1. 10 - __ =
26.
2. 10 - __ =
27.
3. 10 - __ =
28. 10 - __ =
4. 10 - __ =
29.
5. 10 - __ =
30.
6. 10 - __ =
31. 10 - __ =
7. 10 - __ =
32. 10 - __ =
8. 10 - __ =
33.
9. 10 - __ =
34. 10 - __ =
10. 10 - __ =
35.
11.
36.
12.
37.
13.
38.
14.
39.
15.
40.
16.
41. do not use this value
17. 10 - __ =
42.
18.
43.
19.
44. do not use this value
20.
45.
21.
46.
22. 10 - __ =
47. do not use this value
23.
48.
24. 10 - __ =
49.
25. 10 - __ =
50. do not use this value
Subtotal for Column =
Subtotal for Column =
Total ALSSQOL-R =
AVG ALSSQOL-R = Total/46 =
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Page 2
Subject ID#:
Date Obtained: _ _/_ _/_ _ _ _
Average Subscores:
Negative Emotion: (11 + 12 + 13 +17 +18+19 + 21 +22 + 25 + 28 + 31 + 32+34) / 13.
= _______________
Interaction with People and the Environment: (14 + 15 + 16 + 20 + 26 + 27 + 30 + 33 + 36 + 37 + 40) / 11.=
____________
Intimacy: (39 + 42 + 43 + 45 + 46 + 48 + 49) / 7.= ____________
Religiosity: (23 + 29 + 35 + 38) / 4 = ____________
Physical Symptoms: (1 + 2 + 7 + 8 + 9 + 10) / 6. = ____________
Bulbar Function: (3 + 4 + 5 + 6 + 24) / 5.= ____________
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Appendix C: ALSSQOL-R Computer Score Syntax
Reverse Code ALSSQOLR Items.
RECODE
q1 q2 q3 q4 q5 q6 q7 q8 q9 q10 q17 q22 q24 q25 q28 q31 q32 q34
(0=10) (1=9) (2=8) (3=7) (4=6) (5=5) (6=4) (7=3) (8=2) (9=1)
(10=0) .
EXECUTE .
Calculate Average Total ALSSQOLR Score.
COMPUTE Avg TotalQOL = SUM(q1,q2,q3,q4,q5,q6,q7,q8,q9,q10,q11,q12,q13,q14,q15,q16
,q17,q18,q19,q20,q21,q22,q23,q24,q25,q26,q27,q28,q29,q30,q31,q32,q33,q34,q35
,q36,q37,q38,q39,q40,q42,q43,q45,q46,q48,q49) / 46 .
EXECUTE .
Compute Negative Emotion Factor Score.
Compute Negative_Emotion = (q11 + q12 + q13 +q17 +q18+q19 + q21 +q22 + q25 + q28 + q31 + q32+q34)
/ 13.
EXECUTE.
Compute Interaction with People and the Environment Score.
Compute Interaction = (q14 + q15 + q16 + q20 + q26 + q27 + q30 + q33 + q36 + q37 + q40) / 11.
EXECUTE.
Compute Intimacy Score.
Compute Intimacy = (q39 + q42 + q43 + q45 + q46 + q48 + q49) / 7.
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EXECUTE.
Compute Religiosity Score.
Compute Religiosity = (q23 + q29 + q35 + q38) / 4.
EXECUTE.
Compute Physical Symptoms Score.
Compute Physical = (q1 + q2 + q7 + q8 + q9 + q10) / 6.
EXECUTE.
Computer Bulbar Function Score.
Compute Bulbar = (q3 + q4 + q5 + q6 + q24) / 5.
EXECUTE.
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Appendix D: Items by Factor
Negative Emotion
My life has been purposeful and meaningful.
I have been coping well with my illness.
I believe I have control over my life.
ALS has interfered with the important things in my life.
I have felt good about myself as a person.
When I have thought about my whole life, I thought that I have achieved my life’s goals.
Whatever the future holds, I know that things will be ok.
I have been depressed.
When I have thought of the future, I have been afraid.
I have been nervous or worried.
I have felt helpless.
I have felt hopeless.
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Interaction with People and the Environment
When I have thought about my life, I thought that my life to this point has been worthwhile.
The world has been caring and responsive to my needs.
I have felt supported.
I have felt good about myself as a person.
Relationships with those closest to me have been satisfying.
I have been interested in other people or things.
I enjoyed spending time with other people.
I have enjoyed the beauty of my surroundings.
I have laughed.
I was excited about or looked forward to something.
Family and friends have visited me.
Intimacy
My desire for social contact has been strong.
My desire for emotional intimacy has been strong
I have shared emotional intimacy with others.
My desire for physical intimacy has been strong.
I have shared physical intimacy with others.
My desire for sexual intercourse has been strong.
I have shared sexual intercourse with others.
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Religiosity
My religion has been a source of strength or comfort to me.
I consider myself to have been religious or spiritual.
I have prayed to God.
I have engaged in religious practices in my home or in my community.
Physical Symptoms
Pain
Fatigue
My Strength and Ability to Move
Sleep
Bowel and Bladder (Constipation, Diarrhea, Poor Control)
I have felt physically terrible.
Bulbar Function
Eating
Excessive Saliva
Mucous in My Throat
Speaking
Communication has been a problem.
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Appendix E: Participating ALS Clinics and Directors
Penn State Hershey Medical Center: Zachary Simmons, MD
John P. Murtha Neuroscience and Pain Institute: Zachary Simmons, MD
Drexel University, Philadelphia, PA: Terry Heiman-Patterson, MD
Hennepin County Hospital, Minneapolis, MN: Ezgi Tiryaki, MD
Johns Hopkins University: Lora Clawson, MSN, CRNP
Mayo Clinic Jacksonville: Kevin Boylan, MD
Providence ALS Center, Portland, OR: Kimberly Goslin, MD
Stanford University, Stanford, CA: S. Charles Cho, MD
University of Kentucky, Lexington, KY: Edward Kasarskis, MD
University of Pennsylvania: Leo McCluskey, MD
University of Utah: Mark Bromberg, MD
University of Vermont: Rup Tandan, MD
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